Today, Project MinE has received the prestigious 2020 Healey Center International Prize for Innovation in ALS. This global prize recognizes excellence in research for a team whose efforts have catalyzed exceptional discoveries leading to a transformative advance in therapy development in ALS, collectively making an impact in ALS.

Project MinE was started in 2014 by ALS patients Robbert Jan Stuit, Bernard Muller and Garmt van Soest, and is now the largest single disease whole genome sequencing project in the world. The initiative has contributed significantly in the discovery of several ALS genes (NEK1, C21orf2, TBK1, and KIF5a) and generates its success through the international collaboration between patients, clinician-scientists, and patient organizations from 19 countries.

Project MinE is characterized by the unique collaboration between countries that share a custom-made ICT solution in order to be able to process large scale genomics data.

Findings from Project MinE have revealed a new understanding of the genetics of ALS and the genes that were identified from this effort are currently and actively used in diagnostic tests, gene therapy, and drug discovery efforts in the field.

The Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital (MGH) awarded the annual Healey Center International Prize for Innovation in ALS/MND at the joint closing session of the MNDA Symposium 2020. The prize was awarded to the entire Project MinE consortium.